IVF #2 update

Or: Dealing with IVF, one spreadsheet at a time

I mentioned we were due to be heading for IVF #2 towards the end of the month. (More on that later.) Inspired by one of my favourite bloggers, The Great Pudding Club Hunt, I thought I should try and be a bit more organised about what we are doing this cycle. Partly so I have a record of what did / didn’t work but mainly because I am terrible with numbers so I had no idea how long it was going to take, and what was going to happen when. For planning purposes. The first time round I had no idea about timings and just waited to be told what to do next. But this time I wanted to know. T works for a company that has a different working year to mine so he has some holiday to take before the end of it. My holiday year runs from January to December (y’know… like a normal year… just saying) and I also bought 10 extra days holiday in anticipation of wanting to do things slightly differently this time round.

It’s no exaggeration to say that IVF #1 happened during a time when I was super stressed and overworked. This time last year I had run a big piece of work on my own, in an environment at the time which was pretty toxic. The partner who is rather influential in the area I work in (being deliberately vague) was a big bully. He made it really difficult for me to do anything, to the point that I discovered he had deliberately stopped me getting certain jobs by telling other partners I wasn’t any good and they wouldn’t want me working for them.

He also took it upon himself to “manage” my performance and tell me that I should be doing extra stuff, and every time I proved myself on one point he would come up with another thing that wasn’t right about me. (Usually something very vague and immeasurable, about personal profile and networking… Being that I work in a team that’s 99.99999% white male, what he was really saying was “You’re not one of us.”)

I was kind of at my wits end over this. In the company I work for, this kind of bullying isn’t even seen as bullying… It’s just the way it works. The onus is on the victim woman to sort it out themselves and prove them wrong. On countless occasions this has made me want to quit. For example they told me that people didn’t like me or want to work with me. I collected 6 pages of testimonials saying how people did want to work with me and could see the value of what I was doing. Their response? “We can tick that off then and here’s something else you need to fix.” It was soul destroying.

So in that context, when I was handed a proposal the week before Christmas 2014, they were happy for me to do it because they thought it was unwinnable. It was rated as a 10% chance of success. Because it was the week before Christmas, everyone was going to parties and nobody would support me – I built all of it myself. Throughout the Christmas period, when everyone else was going to the Christmas parties, I was working until after midnight – 02:30 in one case – and just trying to get this stuff done. They were amazed when we got through to the second round.

This time last year we were invited to present. I pulled together the entire team. I prepped the presentations and glossies. I herded cats to get junior team members onboarded. And we won. So in IVF #1 I was leading my first really big piece of work. That bully partner? He sends out an email to the wider team every time we have a big win. The partner I was working for sent him a summary of what we’d won so he could send it out. In context, it was the biggest single piece of work won for a new client in this industry for at least the past year. What did he do? He ignored that email. He ignored it 3 times. He never publicised my win, which is the process for every win. I’ve given up trying to win him over and I just try and avoid him.

We started work around the time I started the down regulation. (Buserelin. It suppresses your natural cycle and makes you feel like you have PMS from hell.) I was managing a large and mainly inexperienced junior team for a new, really demanding client. (It turns out this client was the Client From Hell, but I didn’t know that then.) It meant that I was working 18 hour days in a city outside of London (where I live) so any appointments at the clinic required time away from the project. If I was ever away from the project, the client would make life so difficult for my team that I’d feel duty bound to return as soon as possible.

(Aside: I do hope that karma exists, even in a scientific rather than spiritual way. Because there are certain people – the horrible partner and the horrible client – who really deserve bad things to happen to them. I cannot understand why some people seem to find it so acceptable to act so horribly to others.)

Anyway, I said if we ever went through IVF again that I would do it differently. For one thing, I would definitely make sure I was London based when we were doing all the scans (during stims) so I wouldn’t have the stress of travelling hours each way and extricating myself from client commitments to contend with. I get quite a lot of holiday anyway but now I have 10 extra days I can take if I need to (2 weeks off work! Or 10 long weekends!) and that eases my mind a bit.

One thing they don’t really tell you in IVF, at least not at my clinic, is the timings. I guess in one way they can’t tell, although you do get your protocol and you count days from there, but they have to keep scanning you to see how you respond. I have my schedule which is similar to IVF #1 – it stuck largely to plan apart from we ended up with an extra week of stims as I was a slow responder. The difference this time is that we will be using Menopur for stims instead of Gonal F, so I figured that with the few dates I had, I’d be able to work out roughly what my cycle would look like.

What did I do? I did what any self respecting techie would do: I made a spreadsheet.

For the Excel minded among you, this is less of a numbers thing and it is (for weirdos like me) a whole lotta fun. I made a spreadsheet where I enter the date of my period and the constraints (like stim scans at my clinic have to be on Mondays, Wednesdays and Fridays; baseline scans are on Tuesdays) then it works out all the dates for IVF cycle 2. I figured it all out by reading back my IVF diary from last time. (You can do this by going to the IVF experience category on my blog, which contains everything I’ve ever posted on my previous – first – IVF cycle.) This means that we are able to book some time off in March because even if we started in January as planned, I’d have the stims and scans and transfer done by early March.

Anyway, the reason I wanted to do all of this is I wanted to take charge of all this a bit more. It’s easy to feel like, when you’re dealing with long term infertility, that you have no control over anything. There isn’t anything you can do to make it better. I’ve always been academic smart but I’ve never been very non-academic smart. I do think a bit too much afterwards about what people must have thought, or of things I could do differently, and so on… It’s a throwback to my difficult adolescence I think! I was good at school, but I had a tough time at school.

Well – I figured it was time to take back a bit of control.

In between making the master Spreadsheet To End All Spreadsheets to figure out the possible permutations of IVF treatment, which really comforted me – being able to say “If I’m a slow responder on stims then the likely time I’ll need off work for scans is between these dates” is comforting to me, being in the job I’m in – I also started doing some research and booking appointments to try and get to the bottom of this. This infertility. My medical history.

One of the appointments I booked is with one of the (few) doctors in London who specialise in reproductive immunology. Ever since I read Is Your Body Baby Friendly? by Alan Beer, MD (sadly deceased), I’ve become more and more convinced that I need to narrow down the reasons why my body might be failing me, before doing another cycle of IVF. Maybe my many years of infertility are just bad luck – but maybe they’re not. Maybe there’s a reason. Maybe it’s reproductive immunology or maybe it’s some other reason, but what I do know is that the NHS doesn’t really do many investigations other than some fairly standard ones.

Reproductive immunology is not very well understood or supported by a lot of doctors, including the NHS. (The NHS also doesn’t support a lot of stuff, for example the NICE guidelines recommend three cycles of IVF and not all CCGs give three cycles.) The theory behind it is that the body sometimes reacts badly towards conception and pregnancy, in that it recognises aspects of pregnancy as bad and attacks them. This leads to infertility, recurrent miscarriage and/or failed IVF. I discussed all of this with T and whilst he was really sceptical about non-standard treatments, he agreed it would be worth doing the tests if it put my mind at ease. So I did it. The first appointment with Dr S (the RI specialist) is in early February. If he recommends it, I can have various tests and by mid Feb I would know if there’s anything wrong with my immune system that would potentially be preventing pregnancy. We were told that if that happens, I’d have to start taking medication for six weeks before any IVF, so it means I’d have to try and delay it.

Of course, there might not be any RI reason why I can’t get pregnant or sustain a pregnancy. Maybe it is just bad luck. (Lots of it.) Maybe we haven’t tried hard enough. (I find that difficult to believe – I haven’t exactly held back. I was in a long term relationship. Then I had a lot of fun! And when I met T we didn’t “not try” and then actively tried. We’ve done everything we were supposed to do.) Maybe I’m just too old. But I never got pregnant even in my early 20s. Maybe I’m too fat. But I never got pregnant when I was thinner. Who knows? (Maybe I should “just adopt” so I will “definitely get pregnant” afterwards… That’s how it works, right? *sarcasm*)

So I had to go to the NHS clinic where we are due to have treatment and find out if we could delay it. I want to get the tests done before we start another cycle. Even if it means that they say nothing is wrong… I’ll go into that cycle much more positive. As I mentioned above, the NHS is in general not supportive of any private treatment, and more so if it is something that isn’t generally considered normal. I went to see the nurse and asked if it might be possible to delay treatment by a month or two, and she gave me the third degree over it. She asked why and wanted to know exactly where we were going, etc… This is because apparently if you get treatment privately it means you would forfeit your NHS cycles. I managed to gloss over it – I didn’t lie but I kind of said I wanted a second opinion on the fibroid. (I had a fibroid identified in the miscarriage in July 2015, and I had an operation to remove it – privately – in December 2015. In our baseline scan in January 2016 it seemed like it might have come back.)

She said she would put a request in. I guess they can’t make me take the drugs. If I did start according to my protocol, I’d be starting down regulation in a couple of weeks. My first scan is scheduled mid Feb. If I don’t… I’ve worked out the possible dates for a February and March start. It wouldn’t be too tricky so I could still do it. I will just feel better knowing I did everything possible to try and figure out what might be causing my fertility problems before trying again.

I think the thing that people don’t really acknowledge is that IVF is hard. It’s difficult psychologically – that long period of hoping and waiting, and injecting yourself and scans and medical procedures. But it’s also hard physically – the down regulation is basically putting your body into menopause. The stimulation is making your body super-produce eggs, way more than it would do naturally. Your breasts swell and your ovaries swell and your entire stomach swells – ironic really when you’d give anything for them to be pregnancy symptoms. And at the end of a failed cycle – you don’t have a baby. And if you’ve had a pregnancy – your first pregnancy, in my case – there’s the trauma of miscarriage to contend with. There’s telling your parents that their grandchild that they were overjoyed to welcome isn’t coming after all.

So – in the face of T’s cynicism, I did waver. (He is generally supportive. I’m not knocking him. I just think he can’t really comprehend the physical and psychological and emotional toll all this takes. To him it was a one off trauma, experienced through my miscarriage and momentary sadness. To me it was a groundswell of sadness; a loss that has built up over more than a decade and crystallised into a heartbeat on a screen that flickered but never lived outside of me, that was lost in huge clots in a toilet bowl, that was tears and feelings withheld whilst I kept calm and carried on, whilst being bullied by my work and my client. The small injuries of other people’s thoughtlessness, the “At least you know you can get pregnant”s, the “It happens really often”, the “You could just adopt”, the christenings and babies and “Are you pregnant?” And “What are your plans for having children?”. The nine positive pregnancy tests that still live their quiet dark hope in my underwear drawer.)

But what this job, this difficult job of constantly trying to prove myself has given me is money. It’s given me enough money to pay for these tests. Not quite enough to pay off my ex to the point where we could finally buy our own house, but enough to spare, enough to spend on getting this stuff done, to try and put my mind at ease. T thinks I’ve become obsessed with the idea that I have some kind of reproductive immunology problem. I don’t think I have – but I do think there’s a likelihood that there’s an undiagnosed problem, because I’ve had all the basic tests.

The other thing we did was we went to a clinic open day this weekend, for a private clinic that specialises in less medicated IVF (natural cycle IVF and mild IVF). That was really positive because there was a lot of information, which appealed to both of our scientific minds. It made me feel much more positive that there are clinics out there that will try and treat you more as an individual – they are open 7 days a week rather than only scanning on certain days like my NHS clinic, because they’re working with your natural cycle. It is difficult for the NHS because they have to do what will fit with their schedules and resources, and bring benefit to the most people. Whereas if patients are paying they can afford to be a bit more personalised.

What struck me about this clinic is that they are focusing more on egg quality and safety for the woman, and trying to work with her natural cycle to collect the one naturally produced egg (natural IVF) or give her some mild stimulation (not down regulation, which is more to fix a cycle to start at a certain time) to produce a few eggs at ovulation. This means that there are far fewer meds which is a much easier thing to deal with. No down regulation! Much more monitoring and ongoing scanning of ovaries to see what is growing naturally, so ideally you end up with fewer, better quality eggs. They have been shown to have very similar success rates to conventional IVF. Particularly for slow responders, like me. The idea is that slow responders have more stimulation drugs for longer, and then produce more eggs… But they’re not necessarily good quality. My follicles didn’t grow well with stims, and we all know what happened – we got 12 eggs but only one embryo. It would be better if we got 1 or 2 good quality eggs rather than 12 poor quality ones… But that’s not how conventional IVF and conventional fertility wisdom works. At any rate, it appealed to T’s sense of wanting to track through a natural cycle and it appealed to my desire to try to work with, rather than battle my body.

I’m sure it’s a sales thing, but we ended up feeling pretty encouraged by this. If you sign up on the day, you can get an initial appointment at a reduced price, where they do a full scan and blood tests and so on, and figure out if you might respond to natural or mild IVF. It’s a sales thing for sure but it’s also about understanding to a greater degree the kinds of tests that aren’t easy to get on the NHS. We still aren’t sure about what kind of IVF we will end up doing, but we felt that we might as well get as many diagnostics as possible – in this way we can get the standard fertility type tests and then we can get the immune tests too. We will try and understand as much as we can before embarking on our next cycle.

I guess the ideal situation is to get the RI results back, and understand if there’s anything to treat there, and to get the fertility MOT (scans and AMH levels etc to understand ovarian reserve), and try and figure out a protocol that is most likely to give me the best chance of success. The second clinic does have the ability to try and help us apply to switch our NHS funding (2 more cycles remaining for us) to their clinic, but we could only do that for medical reasons, so we will have to decide after we’ve had the scans and tests with them. It sounds as if we are all over the place but it’s quite clear in my head! I feel like we are getting a more in depth diagnosis in clinic 2 (the mild IVF clinic where we are getting scanned next week), and we are ruling out any immune problems with Dr S (the reproductive immunology specialist where I have an appointment next month). It’s a two pronged diagnostic attack! Hopefully we will get the okay to delay the IVF cycle 2 until after we have done those. We’re on it!

And a final footnote? I went online to try and order the prescription prepayment card for my IVF meds. My NHS protocol for IVF cycle 2 is buserelin and Menopur (instead of Gonal F) and if you buy a prepayment card then you can get your prescriptions for cheaper, because you pay a set amount for a period of time and then you get all your prescriptions for that amount. (For non UK people: We do get our NHS treatment “free” in that it’s paid for through our taxes, “National Insurance contributions” that are taken from our salary before we get the money. A prescription is £8.20 per item. A 3 month PPC – prescription prepayment card – is just under £30 or just over £100 for a year.)

I filled in the online form and it wouldn’t let me buy it. I realised this was probably because of my maternity exemption card which I applied for during IVF 1 when I was pregnant. The other thing about the NHS is that pregnant women and mothers get exemptions from paying NHS prescriptions… You also get them for about a year after having the baby. One of the suckerpunch moments was realising I’d have to send it back. (In the end, T sent it back for me because I was too upset.)

It said on the website that I’d have to call up if I wanted to buy a PPC so I did, and explained about the fact that I had had a miscarriage. The guy on the end of the phone was really sympathetic and said he was sorry to hear it. And then he told me this: If you have a card, you get to use it until it runs out.

What the heck?

Apparently the maternity exemption card is valid even if you have a miscarriage. He said he was going to send me a new one. So this means I can use the maternity card to get prescriptions for IVF meds!

23 comments

I am glad that horrible job at least is able to give you financial flexibility. I so don’t blame you for getting the immunology testing- I might do that as well. Do you know what the tests are? I will be crossing everything for you this cycle!! Xo

Thank you! Yeah, there are some plus points. I’m not rolling in it but at least I can afford to pay for a first appointment at each clinic. The RI tests are dependent on what Dr S thinks might be relevant. If I had all of them, it would cost £2k which I’m hoping wouldn’t happen. I could probably scrape that together but it would hurt! There is a whole range of tests to do with different types of immune response. Some things stop conception and some stop implantation, and some stop placenta development etc. The most common are NK (natural killer cells) and blood clotting disorders. It’s probably slightly different for me as I have long term infertility rather than recurrent miscarriage. Although my really heavy and occasionally late periods could be early miscarriages; I don’t know. Anyway I am hoping it at least means we could rule out a few things!

What an incredible, complicated journey you are on, but I do believe all of this will really make holding your baby one day that much sweeter. You will know what a gift it will be. That’s what I am banking on through my experiences at least! I think the deep appreciation you have for the process, and the tenacity you are showing, is wildly inspiring. Looking forward to a good cycle for you!!!

I know! Maybe I’m clutching at straws. But I do feel like we have tried lots of things and never got an answer about what might be going on. Maybe some people just can’t ever have children. I feel like I want to explore everything and find out if there is actually a reason! Thanks as ever for your support!

Yay for silver linings! I am wrestling with the idea of consulting with an RI as well, even though they are not yet regarded as mainstream (it seems that a lot if docs think it’s fake, but then so many people are treated and have babies). I am scared to shell out the money but also scared that if I don’t I’ll never have a successful pregnancy. I actually live about 40 min from Alan Beer’s clinic in Cali, so if I ever work up the courage I should go there, lol. Was his book a good read??

Ahhh if I lived near his clinic I would go! That’s why I put “sadly deceased”… It was only 2005, and he helped so many people during that time.

I would recommend the book. It is very scientific and pretty hard going but there are personal stories throughout and I just thought “wow! That’s like me!” (Lots of the women had recurrent miscarriage but some had long term infertility and failed IVF.)

His philosophy is that even one miscarriage is one too many. And that some people have stuff going on (like NK cells or blood clotting disorders) that would prevent them ever sustaining a pregnancy without medication.

There are lots of immune responses so that’s why it’s not that easy to sum up in one sentence. Because the immune system can attack a pregnancy at any stage depending on the response. For example it might prevent implantation. Or it might make the blood clot in a weird way which means when the placenta grows, it chokes off the supply to the baby. It’s definitely worth a read to see what you think! And I figure if it is a few tests and it’s nothing then all I’ve wasted is some money.

Great to hear you’ve got a plan and are taking control. I know you are a smart girl so you’ve probably considered this already, but PLEASE approach the immunology stuff with a pinch of skepticism. Many clinics will ask you to fork out for repeated tests, treatments and ‘magic beans’. 6 cycles of IVF have taught me that there is an awful amount of ‘woo’ out there in IVF world. I do wonder how much post-immune success is due to the treatment or sheer luck. Maybe I’ve been influenced by my BFF Prof Robert Winston (http://www.genesisresearchtrust.com/ivf-and-other-answers/nk-killer-cells)

That said…there’s nothing wrong with finding out what your ‘levels’ are and then you can decide what to do. The blood clotting tests are not woo, they are easy to do. It’s bad that your NHS clinic isn’t doing those for free. Dr S (being a Londoner I can guess his surname 🙂 may also recommend Karotyping and FISH tests.

Finally, have you thought about trying CoQ10 and/or DHEA? Both helped bump up my egg numbers, and they are supposed to help quality. Didn’t help in my case but it’s an easy way to do something ‘positive’.

Yeah, I understand your scepticism and I also know that Robert Winston thinks it’s hokum. That said, he also doesn’t recommend natural or mild IVF over conventional IVF either. (He does appear to in his book and then he specifically doesn’t recommend it on his website!) T was also very sceptical of RI as I mentioned. I don’t know, I found some of Robert Winston’s advice a bit vague as he specifically doesn’t recommend IVF in general but he doesn’t really recommend an alternative apart from keeping on trying (I’ve done that for over 10 years) or giving up (which I don’t want to do right now but may do in future).

The way I see it is I shell out a bit for some tests. Either it turns out to be nothing and I’m no worse off – I’ve delayed my NHS IVF for a few months and I am a few hundred (/grand!) down. At the same time we get a bit more info from the private clinic. I know the NHS does “some stuff” but I found my clinic pretty reluctant to share information. Maybe they’re repeat tests but at least I can get a second opinion rather than piecemeal information from lots of different docs. I am not knocking the NHS but they are doing the best they can with limited resources, and I want to understand the bigger picture.

Maybe it’s me just not understanding fertility but I don’t get why you’d just chuck treatment at someone without trying to understand the root cause. Maybe it’s not possible to understand every cause of infertility (and maybe it’s multiple causes) but I do think that my history is longer than most people’s, so it’s not likely to work by just keeping on trying.

I totally agree – it’s bizarre that the NHS takes a one size fits all approach to IVF. My first (and only free) NHS cycle was a complete shot in the dark. I had no idea what any of it was about and just did exactly as I was told. A nurse admitted that the first cycle ‘doesn’t count’ as they have no idea how you will respond to the bog standard treatment, which is deeply depressing. We really only started making progress when we started paying for treatment and therefore received personalised care from a consultant gynaecologist. He did the various tests and investigations that I should have had the first time around. He is old school though and doesn’t believe in immunological stuff, although he agreed (after much nagging) to put me on a medium dose of prednisolone ‘just in case’. We did do the blood clotting, FISH, karotyping tests. I felt completely reassured that my fibroids weren’t an issue (he checked the inside of my uterus 3 times ?!)

I also did a secret ‘7 in 1 infection test’ behind his back which put my mind at rest. He thought it was a load of phooey but some docs think hidden chlamydia can cause IF. Not the case for me, but you might want to check it out – cheap to get it done by post http://www.ivfserum.com/infection-screening/

It’s good that you are taking control of your own treatment, it definitely helped me feel better about everything. I felt pretty confident when our 5th cycle failed that it was down to my crappy eggs, not some hidden physical issue that we had missed. Just be wary of quackery! I know you will be – you and T are sensible types.

Yeah, it seems unfair that the cycles are such a lottery. My sister only gets one cycle too. It seems nuts when the first one is a bust that they don’t try to figure stuff out beforehand, but diagnostics cost money and observation takes time. I was also told that the first cycle doesn’t really matter but then I felt a bit worried that they’re only changing Gonal F to Menopur (not sure why – they tell us very little about treatment, which I found oddly comforting the first time round but this time I wan to know).

I think the paid for appointment with clinic 2 (the mild IVF specialists) is similar to what you did, in that they do a much more sensitive scan and run through your medical history. And the other tests I don’t know if they do but I’m kind of of the opinion that I’ll do however many I can afford!

And that’s what I want to feel too – that I’ve eliminated any other reason than bad eggs or whatever. So if it fails, I know that I did everything else I could.

Not a bad thing that they are changing Gonal F for Menopur – I always produced more eggs with the latter. Would be nice if they explained why though! Usually I’m pretty happy with the NHS approach of ‘get what you’re given and be happy with it’ but this doesn’t really apply to IVF. It’s a bonkers system really.

That’s interesting as one of the things that clinic 2 advocates is avoiding over stimulation. Basically they say they would rather have 1-3 good eggs (either a natural cycle or mild stimulation) than lots of poor quality eggs. I produced more eggs than my sister and only got one embryo whereas she has some frosties. It’s interesting to look at the outcomes versus the number of eggs because sometimes the majority of eggs don’t lead to blastocysts.

I’m with you on the NHS thing. It’s not that I’m unhappy; I just feel they are constrained by not being able to offer a personalised service. Almost everyone I’ve met to do with fertility has been really nice. But I do think they’d probably have better success rates if they tried to be more personalised. It might cost less overall as well as they’d not do as many failed cycles / fewer drugs. But I do understand their approach.

Haha, thanks! I know you do a lot of tracking and I really felt the first time it was better not to know, but I want to know this time. At least it means I feel a bit more in control in terms of knowing about likely time off. And yes, unexplained infertility DOES suck! One thing I’ve noticed is each time we go to a clinic, it’s always full. So it affects a lot of people… Before we started on this journey, I felt like it was just me being a freak!

I also meant to ask about whether you have discussed with your doc about the antagonist protocol – there’s no down regulation! And I think the thing with Gonal-F v Menopur is that because Gonal-F is synthetic and Menopur is natural (well from chinese hamsters anyway) that each and everyone of us will react differently to each type. I had a mix of both last time round – I guess so that they can negate the risk of a poor response to one of the other!

We had an appointment at a private clinic today (update to follow!) – it was interesting really as there is a real difference between the amount you feel you can ask at a private clinic, where you’re paying, versus an NHS clinic. As I’ve said before, I’m super grateful for the NHS but I also feel our choices are limited by their standard protocols. We don’t really get to question them – we just have to either take them or not take them. Interesting (to me anyway) that the private clinic focuses more on egg quality than trying to produce lots of eggs.

Jan 15 a friend of mine started IVF after 10 years of trying. She went down the immunology testing route, based on the results the Dr she was under believed that was the cause of her previously unexplained infertility. Dec 15 post one round of IVF she gave birth to two healthy twins. Stay positive, miracles do happen and as for the boss, slip some laxative in his coffee 🙂 (not really but the idea is fun!)

Ah thanks, that’s really nice of you to say and offer me hope! 🙂 I do feel a lot of the time we are trying to play very long odds. And I know a lot of people think immunology isn’t a good reason, but in the context of a long long history of infertility, I think it’s worth trying to figure out reasons!
I am very hopeful for the immunology testing, but trying to play it down! 😉